Supporting
Sarah...
I wanted to tell you what an inspiration Sarah Watson is (And the Winner is...,
PN 121, April). Like Sarah, I was also diagnosed late in my teens too but
didn’t manage to cope as well as she did, spiralling into a depression
while struggling to deal with my diagnosis.
Despite going through the hell of an abusive partner, an abortion, and stigma
(which we all face), she turned her life around and has done some good work
by speaking out to the media about HIV.
Having what sounds like such a supporting family and friends around her must
have been a big help. Sadly, not all of us are so lucky. That’s why
I agree with her view that if all of us with HIV stick together and look after
each other, we can make a difference.
Janice, Name and address supplied
...and dissing doctors
I could relate to your article Finding Doctor Right (PN 119, February). I’ve
stopped taking HIV meds for the fourth time running as my doctor refuses to
listen to me. One time, my medication nearly killed me. My doctor gave me
ddI which I believe isn’t suitable for diabetics. I ended up in so much
pain I stopped taking my meds, despite an emergency doctor telling me to carry
on.
Then last year I stopped because my latest doctor changed my meds three times
within three weeks. One of the tablets caused my sugar levels to go up really
high. I knew it wasn’t my diet but my doctor wouldn't have it. These
are top doctors and the tablets they gave me are well documented with regard
to effects on diabetics. The people who are supposed to be looking after my
well-being are taking no notice; they have this one-size-fits-all attitude.
In my eyes, that is neglect.
george rodgers
Travel tips
I recently returned from a holiday in Miami. The sunshine state was a real
tonic for me, but, as usual, I was initially full of fear about getting my
meds past customs. My last trip involved a 24-hour delay and having put my
pills in my luggage to be checked-in, I missed my doses. This time I asked
friends and my consultant what I should do and was advised to put them in
my hand luggage.
When I got to customs they were noticed, but I was allowed through, providing
instant relief. All went well but, on the way down to Key West by car, I had
forgotten one of my meds, one I have to keep in the fridge. By then it was
too far to go back, so I resigned myself to the fact I would not be able to
maintain 100 per cent adherence, something my consultant insists on. Luckily
I picked up a safe sex pack and rang a number for advice. After a few calls
I managed to get hold of some medication for which I am eternally grateful.
I would hope that here in the UK we would be able to offer a similar service
for visitors in the same situation. It would be interesting to know how easy
it would be for HIVers to obtain meds without all the red tape,
especially as time is so important.
Malcolm, Manchester
Oral transmission unlikely
I find it hard to believe the man who wrote the letter ‘Oral History’
(PN120, March) explaining how he caught HIV through oral sex. Most gay men
consider oral sex as safe, and if it was unsafe there would be a much greater
increase in new cases of HIV. I for one would have caught HIV years ago if
oral sex was unsafe but I was only diagnosed in September 2004.
The fact I caught HIV is down to my not being careful. I’ve been having
sex since I was 19 and I’m now 37. Some of the men I’ve had sex
with were clearly ill with HIV.
I’ve had lots of different sexual partners, have became complacent and
had sex without condoms. Stupid I know, but the people I was having sex with
didn’t want to use them and I was just going with the flow.
The fact that the man in the original letter fell ill four weeks after having
performed oral sex on a stranger is probably coincidental.
I think he already had HIV. Like most gay men who have caught the virus, I
have tried to figure out which one of the many partners I’ve had passed
it to me. I think I know, but he has never confided in me that he is HIV positive,
yet he is quite clearly ill. Having said that, I could pull a name out of
the hat as it could be anyone of the many men I have had sex with.
Unless government starts scaring people with the facts of HIV through TV adverts
again, the craze for unsafe sex will continue.
Steve
Why no HIV stem cell research in UK?
I’m a patient at Nottingham and London’s Chelsea and Westminster
hospitals and I address this letter to all consultants I’ve had contact
with, and who I now want to find a long-term solution for HIV patients.
I’ve been hoping that someone would start using stem cell research to
grow CD4 cells. After all, if this could be done, in the long-term we could
be looking at simply replacing HIV patients’ missing cells. Surely this
could be the future for HIV treatment, without involving drugs and their side-effects,
and help to normalise our immune systems?
Dr Mike Youle from the Royal Free hospital tells me that, to his knowledge,
there’s no research in this area. While Svilen Konov at i-Base tells
me Dr Mark Bower at Imperial College has done some small studies in HIV patients
with non-Hodgkin's lymphoma. But no-one seems to be doing research into growing
CD4 cells as a treatment for HIV.
HIV is not included, nor is there an HIV consultant listed, in the 2005 UK
Stem Cell Initiative report (www.advisorybodies.doh.gov.uk/uksci/uksci-reportnov05.pdf).
This amazes me so I’m writing to ask all consultants and scientists
to consider this, as it could well turn out to be a long-term answer without
the side-effects of HIV drugs.
Andrew, Nottingham
Is
condom advice flawed?
I’m 34, gay and newly-diagnosed in March. I’ve always tried to
practise safer sex so I’m surprised, although not looking to blame anyone.
I’ve asked myself if I’ve always used protection and whether this
ever failed at any time (which I cannot think it has). A couple of friends
I’ve disclosed to say condoms aren’t 100 per cent reliable, citing
unwanted pregnancies as an example. I am staggered to read estimates of a
one to three per cent failure rate for something I have been brought up to
believe as foolproof.
This reminded me of a change in policy in 2005 where adverts stated that regular-strength
condoms were as suitable and safe for anal sex as traditional extra-strong
condoms, as long as the right lube is used and in adequate amounts. I assume
therefore that bars, saunas and outreach charities have been providing only
regular-strength condoms for the past year.
While I understand tests were carried out before this condom advice was issued,
and I cannot be sure about my own source of infection, I feel there must be
increased risk for gay and bisexual men. I sincerely hope the numbers of new
diagnoses in 2006 will not show a large rise, but if they do, consideration
should be given to ‘unlucky’ men like me who have always followed
the guidelines and relied on condoms supplied in sex venues and by charities.
Name and address supplied
No sympathy for Matias
I read your comment (PN120, March) about the now deceased prisoner Paulo Matias
with great interest as the case has similarities to my infection.
My opinion is in stark contrast to yours. I was infected with HIV by a 20-year-old
girl who was fully aware of her status before she had unprotected sex with
me. It was not a one-night stand; we talked extensively for a week before
having sex, during which time I asked her a few times whether she had HIV
and she said no. She was sexy and I am a hot-blooded male. And I was possessed
with what I now understand to be crazy naïvety, hence we had unprotected
sex. I could have used protection, but don’t believe many guys or girls
exercise this discipline like they should. Nonetheless, she should have told
me and what she did was despicable.
I was mixed-up afterwards, angry enough to involve police, but then continuing
to see her. I felt that by not seeing her she would move on and forget she
infected me like it was no big deal and probably do the same to someone else,
leaving me with no one. By continuing to see her I felt less exposed; less
desperate; less isolated. I was trapped psychologically for some time, sometimes
calling the police back in to intervene to prosecute only then to see her
again when the police took weeks/months to act. The police eventually advised
there would be no case.
I have finally moved on and am now married with a beautiful, healthy daughter
who I love with all my heart. If I could re-run that time of my life, I would
have stayed away from the girl to ensure she was convicted. What she did was
very wrong and Paulo Matias deserves zero sympathy. He paid a price for his
crime. I could sleep with many girls and say nothing of my illness. Great
fun for the sex, yes, but how sick would that be?
NAME and address supplied
PN too gay?
I write to challenge your choice of cover pictures which I consider derail
the vision of the publication. The past three editions have carried content
that promotes gay issues. HIV and Aids reporting is not complete without the
gay community but at the same it’s not exclusively a gay issue. PN is
not only for gay communities but for all. So why is the editor choosing gay
pictures over this period? I believe she should be liberal in her choice of
cover stories by giving communities equal share of publicity. For example,
we have not yet seen a cover page of a faith activist, nor any African leaders’
efforts in combating Aids on the continent. And when the landmark Miss HIV
contest took place in Uganda to reduce stigma, the event was casually and
briefly reported by the magazine. What a stigmatisation.
Pastor Yinusa Rex Ajenifuja, Executive Director Hope for AIDS Outreach
(Christian faith-based NGO), Nigeria
PN is a magazine for all people living with HIV and Aids and we continually
strive to reflect the diversity of our readership. Sometimes it is a challenge
to balance imagery in the magazine to ensure it is relevant all our readers.
It can be especially difficult to find people from African and other minority
ethnic communities happy to appear on the front cover of the magazine due
to real or perceived stigma associated with disclosure of their HIV status.
Our recent coverage of men who have sex with men in Africa was an attempt
to tackle another area of related stigma which is hampering the fight against
HIV.
The Editor
Shame on LGBT businesses
It’s often said that as a minority, the gay community should stick together.
Well, I’m afraid that gay owned/run companies seem to have forgotten
this. I was fortunate enough to help organise a fundraising camp and comedy
night at the Black Cap pub in London for the St John’s Hospice in north
west London. I spent weeks writing to businesses asking for donations for
the raffle and auction. Harrods donated a food hamper and other offers soon
arrived from the BBC, Wagamama, Little Britain and Cobra beer to name a few.
But the lack of response from gay businesses shocked me. I wrote to 12 gay
shops, restaurants and hotels and only one, clonezone, had the decency to
help. I heard nothing from the others. Compare that with the 13 acts and two
DJs who gave their time free of charge when they could have been working elsewhere.
The LGBT community spend millions each year. Surely their bosses should remember
this when it’s for a deserving cause. Let’s face it, we all might
need a hospice one day.
Richard Morris, Halesowen, W Midlands
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